The most meaningful comment from #NORDSummit for me was by @DrMichelleBIO on a panel on the impact of COVID on #raredisease research and drug development: "...the social compact around #clinicaltrials is broken." (🧵1/7)
"You know, it's hard to expect
people to leave their jobs, leave their children without childcare, come to clinical centers for numerous appointments on top of what's required for their illness to test a product that they might not have access to at the end of the day." (🧵2/7)
people to leave their jobs, leave their children without childcare, come to clinical centers for numerous appointments on top of what's required for their illness to test a product that they might not have access to at the end of the day." (🧵2/7)
"We have depended on the overwhelming goodwill of patients to conduct trials up to now and I think it's time for us to reconsider the incentives because what's at stake is huge." (🧵3/7)
"We need to have medical products that we can rely upon and that diverse communities can trust when we're trying to stem the tide of illness. …we have to bend over backwards, do whatever it takes and sometimes that may involve reconsidering how we incentivize patients" (🧵4/7)
"to participate in trials. It’s been an anathema to offer people incentives to participate in trials and we don’t want to skew the population but we do want to make sure we’re reflecting it." (🧵5/7)
"And this is all the more complex in the #raredisease space because often… it’s difficult for them to even get a sense of what’s the representation of different populations in the baseline community of a rare disease." (🧵6/7)
"We need to start there and then make sure our trials are representative. Much more so than the absolute diversity is making sure that they’re representative of the patients we’re trying to serve at the end of the day." Thank you @DrMichelleBIO 👏👏👏 (🧵7/7) #NORDsummit
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